AnonymousSeptember 4, 2009 at 10:48 pm
Hi all !!
As I was putting the date on a legal document today, it dawned on me that 5 years ago today, Sept . 4, 2004, I was in the emergency room at a local hospital, getting numerous tests done to see why I was going paralyzed from what eventually would be correctly diagnosed as GBS!! My 5 year “hellaversary”.
Someone came up with that term “hellaversary” several years ago and is most appropriate, I think….
I am sooo thankful that I have made a most remarkable recovery to almost pre GBS conditions……..(not totally, but for the most part) 🙂
Just thought I would start this thread so that others may post their “hellaversary” dates here……………….
AnonymousSeptember 5, 2009 at 8:53 am
I don’t remember the exact date but it will be 5 years this fall. I got it from a flu shot and was diagnosed about 5 months later. After about 7 weeks I went to the emergency room was there 6 hours when they told me they didn’t know what it was but don’t worry it’s not a stroke because it’s affecting both sides at the same time.
Saw my family DR 2 days later then about 10 day later saw the local neurologist who said I had a problem and to come back in 3 months for a follow up but wouldn’t say more.
By the time I saw him I was feeling better walking better. Never lost time from work except to see the DRs. 3 months later I saw him again and he said I was getting worse so within 3 weeks I was seeing a DR from Ottawa who I still see now.
Last year she got the head of the Neurology department (DR Bourque) to see if their is anything more she could be doing for me and at the time he said no she did everything by the book. By now I am in a relapse. My next visit with her is at the beginning of October then she goes on Maternaty leave so then my case will be sent to DR Bourque for him to take over my case.
His name is in the Canadian GBS/CIDP communicator magazine so he knows his stuff especially since he is the head of the Neurology Department at the Ottawa Civic Hospital.
AnonymousSeptember 5, 2009 at 11:34 am
I will have my two year hellaversary on Oct. 18. It took two weeks
to be diagnosed, after 15 plasmapherisis treatments I never fully
recovered but I am greatful for the recovery I did get.
I know we are all different in our recoveries and can’t judge our own
recovery on others.
How long did it take for you to recover?
AnonymousSeptember 5, 2009 at 2:28 pm
September 6th will be my 2 year hellaversary. I was diagnosed after going to the emergency room and being diagnosed with a low potassium level and told to follow up with my primary doctor. The next day, I saw my primary doctor and then sent to a neurologist that same day. I was admitted to the hospital and diagnosed with GBS. I started IVig for 5 days with no success. I then spent 7 days in ICU and then started on Plasma Pharesis for 5 days. I spent three weeks in Rehab before being able to come home.
September 5, 2009 at 6:36 pm
Happy Hellaversary! I think it is interesting that you realized the significance of the date after seeing it on paper. That has to mean something in the way of healing and recovery.
AnonymousSeptember 5, 2009 at 11:16 pm
Thank you all for your replies……………not really something to celebrate, but certainly can’t be forgotten.!!
I am reminded of the “date” of diagnosis every Labor Day, since I was diagnosed on the Friday before Labor day.
I was 30 days in ICU hospital, 2 months inpatient rehab, 4 months outpatient rehab. Back to work in 8 months………………… then, very gradual recovery…..so, about 2-3 years total recovery.
Nice shot of you and Norb in the wine grocery store. Wow, Ohio’s got it goin’ on!!!! 🙂
AnonymousSeptember 6, 2009 at 7:25 am
November 6, 2005. I can remember every hour of that day. I went down in a very acute manner and have a very good neurologist that knew what he was looking at within minutes.
I can’t imagine not being treated as mentioned above. I have a question and I guess a comment because I don’t know where else to write this; the large amounts of pain medication I’ve been taking now for so long I believe have been masking a very nasty arthritic condition that would have been really looked at and worked out had I not been masking the pain from it with my GBS Med’s.
I am going to a rheumotologist this week. My life was getting better about 2 years ago and I have slipped into a slow, depressed decline as I have had incredible breakthrough pain from time to time that sends me to the ER. I won’t self medicate any more than my doctor has prescribed so I go to the ER rather than do something stupid.
So here is the hard part; I feel like my life has been stolen. Taken away from me. I was a vital, hard working guy that tried hard to provide for my family and I have been reduced to a grouchy lifeless bum.
I think about my children a lot. I wouldn’t ever OD because I think it’s wrong and I love my family despite the trouble I cause for them. But I think about dying a lot lately. I feel so upset inside. Worthless. And I have tried to find some things to do in life that might spark my attention and revive my love of life, but right now and for nearly a year I have been a coward and prayed that I would be taken in the night or in some way.
I know that I cannot succumb to these feelings and I needed a place to get it out of me, I guess–so there you have it. I am ashamed. I know I need to try harder but pain is my life companion and I just want it to go…
I read about the strength you all have in here and Im embarrassed to feel so terribly unable to cope.
Love to each of you fighting the good fight.
AnonymousSeptember 6, 2009 at 9:18 pm
Hi Ty: Sounds to me like you are coping as well as you can. I got GBS in May ’05 and have been on pain meds since then as well. It sounds like the arthritis may be contributing its pain, so hopefully getting that diagnosed and treated will help. I don’t know if the breakthrough pain you speak of is neurological, like neuropathy, or more in the joints from the arthritis, but if you are going to the ER for pain then you are not on the right dose or the right meds. Depending on what you find out this week you might go to a physiatrist, a doctor who specializes in pain management, and see what you might do to help yourself. You are not alone in feeling overwhelmed and having death thoughts. I still get moments of being overwhelmed by what I have lost and wondering what I am living for any more. I think that is very natural given what we have been through. I have learned not to talk myself out of my feelings, but just to be in the moment I am in. I don’t think about the past or the future, just what I am doing now. I try to give it my full attention, even if what I am doing is mundane, or painful. Living with chronic pain has taught me to live in the moment and enjoy them all for what they are. I remember being in rehab unable to do anything but PT and then sit in my chair-not read or watch tv or anything. It taught me about just sitting and being.
When I got sick I was writing, and traveling around the country teaching and working full time. Now I can only work half time and have to spend a lot of time reclining on the couch. It is easy for a man to feel pretty useless if we are not out there achieving things, but there is more to life than that. I don’t mean to preach but I want you to know that there are a lot of us that know what you are going through. Let us know what you find out and how you are doing. Since God may not be taking any time soon you might find an alternative plan-start with treating your body and finding the help you need in getting on top of the pain.
and Perry, it is nice to celebrate this anniversary-at least we’re still here and doing our thing. Spring always makes me think of the hospital now and it probably always will. Jeff
AnonymousSeptember 7, 2009 at 1:52 am
Before I was correctly diagnosed with CIDP and had 2 years of IVG under my belt the non-stop horrid “I wish I was dead yesterday pain” knew no end. Today I can’t imagine how I was able to even exist in that much pain. My good friend watched me in agony and told me she truly would understand if I decided not to go on living. She’s never seen anyone in that much acute pain.
I go to a physiatrist who specializing in pain management.Ask every doctor you see what they may think in causing this pain. Take an advocate with you for support.
Pain drives ya bonkers. I wonder each day if it’s going to come back like it was before.
I try to find some joy in the most simple daily things.It’s not easy as you well know.There are several excellent older Forum posts on pain and when I read them it did help. I didn’t feel as alone.
AnonymousSeptember 7, 2009 at 5:37 am
Oddly, validation kind of makes things seem more ok. At least there are other people out there that understand the kind of acute pain that makes nothing else in the world matter.
I am kind of running at a high level of pain med’s right now, IMO.
What pain medications are you guys using or have you had that have helped you the most.
I use duragesic patches, percocet, neuronton, valium (to create width between percocet doses when I don’t feel too bad but don’t want to feel like it’s time to take my meds) celebrex seems to help a lot, which makes sense with arthritis.
The break thru pain use to happen only every 3 to 4 months, then I have had more frequent times this last 8 months.
I’m afraid of “pain management” clinics. I have heard too many things about them that make me afraid. When the system is designed to keep someone else’s paycheck coming as long as you’re on pain med’s, I get nervous.
Is that where most physiatrists would be found?
Again, it took a lot for me to come here and say the things I have. But, saying them and then hearing you has been one of the kindest things done for me in a long time. You’re amazing people with an obvious love for others and a willingness to share it. I don’t know how many of you believe in God. If you do then I believe you’re words are those God would have shared with me. If you don’t, then they are the words the God I believe in would have shared with me.
That’s the best way I know of saying thank you. I’ve heard of people talking to someone about your feelings and how that might help you–I have never experienced that kind of thing before until now. Somehow, you guys just said the right things to the right guy.
I am grateful.
AnonymousSeptember 8, 2009 at 12:00 am
“Again, it took a lot for me to come here and say the things I have. But, saying them and then hearing you has been one of the kindest things done for me in a long time. You’re amazing people with an obvious love for others and a willingness to share it. I don’t know how many of you believe in God. If you do then I believe you’re words are those God would have shared with me. If you don’t, then they are the words the God I believe in would have shared with me”…………………..
…………..When I saw this, I thought how beautiful a paragraph this is for all the members to see. How grateful you are and how much you appreciate the responses you have received. Ty, there is a lot of references here as to all of us being a “family”….etc. And it is true. There is so much care and loving on here. Everyone trying to help each other.
I am glad that you see the “goodness” and “consideration” of everyone on here, and hope u keep coming back with more input and questions……we are all here to help and support each other…..:)
Welcome, and happy 2nd………………..oh I hope you don’t relapse. Don’t think like that…………think positive the other way (that there wont be).
There are others that should respond inre to relapses. What they have experienced and how to cope or what to expect.
But you are being paranoid more than likely. I was too…..thinking that for the first couple of years after. But I havent had one, and most people don’t.
I got excited when I saw where you were from……………….I went to Texas Tech ( 1965-1970)………damn………now I have given away my age………….lol. Anyway…………”guns up” 🙂
Take care and don’t worry,
AnonymousSeptember 8, 2009 at 12:46 am
Ty, the hard thing to do is finding the right type of pain relief, the right dose and timing. Everyone is different, so its really an individualized problem. I have fair control with neurontin, but lately have added tramadol to the mix, due to an increase in pain and problems. I’m sensative to most meds, so finding something that helps control pain and I can take is really a task. I found by taking smaller doses in a more spreadout timing throughout the day helped with better coverage.
I believe if your pain were controlled you would feel better about yourself and back to be able to enjoy your family like a new Man! We all know how you feel, we all go through the steps of loosing our old selves and having to live a new normal life with the body we are left with. Please feel free to vent or ask all questions you have. We do understand!! Take care.
AnonymousSeptember 8, 2009 at 1:44 am
I had gone to one of those mega multi-location pain centers and after a lot of just awful stuff I changed over to a phydiatrist. They may be in the phone book but I happened on mine through the grapevine. He’s a one man office and I like that.Of course he had no clue on CIDP but after having me as patient for 5-6 years hope he does.
I’m on 100 mc Fentanyal patch changed every 3 days. Used to have 6 Vicodin a day too but rarely ever take one now. Sometimes gotta had a small bit of Ativan for comfort but basically the IVIG has helped tremendously with pain.
Do check the other older threads for “pain” and “pain meds”.Another website is PainFoundation.org/sends free newsletter.
AnonymousSeptember 9, 2009 at 7:05 am
Can I tell you how much I love you for your collective responses. It’s hard for a man to say “I give”.
I have my first Rheumatologist App’t today. I am very upbeat about the prospects as I know that I have an underlying arthritic condition that is knocking me around like the ol’e rope a dope…And I’m the dope.
Your words of encouragement will stand as a testament of your caring love and kindness toward those you do not even know but felt inspired to reply at the time I needed you most.
We need a better word(s) for “Thank You” in our normal english vernacular. I cannot thank you enough for your smarts, your caring attitude, helpful comments and you have staved off my hardest moments and made them okay.
Much love to you all that felt compelled to reply to me. My gratitude is complete because you help me keep my family intact and my priorities straight. Thank you.
AnonymousSeptember 21, 2009 at 5:10 pm
Jan 3 2004 having just returned from India w/family — collapsed right leg left arm Dx took a while as they tested me for every known tropical disease first -but had an acute case — respirator 3.5 months ICU one month, hosp- transfer to Mt Sinai NY 3 months, Burke 3 months,-sub acute 3 months, back to Burke rehab 3 months and finally home in power chair — remaining period at Danbury Hosp rehab where I stated walking with walker -and have moved onto loftstrands but still a bit wobbly– powerchair now in garage! driving, traveling again, went for a swim this year cheered on by family and still making progress at rehab and gym — hands are still lagging behind but able to type on the machine and when needed can survive on my own although my wife may not always approve of the diet . At age 72 –I’m looking forward to becoming even more independent with loftstrands and maybe a cane as the long term goal
The illness has given me a very different look on life and has allowed me in some ways to appreciate many more phases of what life really means.
As for that anniversary — a little hellish — but happy to be still improving or as we say Getting Better Slowly
Robert Jones 🙂
AnonymousSeptember 22, 2009 at 2:31 am
CONGRATULATIONS, ROBERT !!!!!!!!!!!!!!!!
What a courageous battle……..and a ‘hell” of a comeback….:)
Good for you. I think your story here would be an inspiration to many others struggling in their recoveries. See ya’ll? You can come back from this!!! 😉
Take Care and Be Safe,
AnonymousSeptember 30, 2009 at 7:38 am
july 2006 … um 21st???? i see it as a good sign that just 3 years down the track i cant even remember my helliversary lol. For so long GBS dominated my every waking moment. Now i forget i even had it despite 4 weeks in ICU. If it wasnt for the release of the new Panvax for Swine Flu here in Aus i probably wouldnt be thinking of it now. Thats not to say i am not grateful every single day that i got my life back just that it is now something i carry deep inside me, not something i am conscious of.
AnonymousSeptember 30, 2009 at 11:59 pm
October 21 will be my 6 year helliversary… I am thankful for each and every one of you and the support and kindness you have given me thru this journey. I pray that I never experience GBS again but if I do then at least I know you will each share my journey.
Take care and God Bless..
AnonymousOctober 1, 2009 at 2:48 pm
My helliversary is …wow, was September. Is it really October already ???
Anyway, three years for me. Scared still when I think about it too hard. Where I started and where I am now. I didnt have the traumatic experiences that so many of you had. So strange how this is different for all of us.
Ty, I am so glad you found our group. You know now that you arent alone with anything you’ve felt or thought. I’ve been there, too. I’m fortunate to have an awesome husband and little boy that keeps me fighting to be the whole person I used to be.
And I am so stubborn !
I see a physiatrist, pain mgmt dr b/c I got hooked on vicodin. I took it for my back, for my nerve pain, and then took more and more for the pain I had in my heart. My Mom was dying and I was dying inside b/c of it. Before I knew it, I took way more than they prescribed. I didnt mean to. That’s not who I am, nor the kind of person I ever wanted to be.
I am a wife and mother…not a drug seeking dr shopper.
I’ve been vicodin free one year this month. What a difference my life is.
I’m not one to judge and I do believe pain meds are needed…if you need super strong narcotics, by all means take them…that’s not what I’m saying…I just wanted to share my story and why I see a pain mgmt specialist.
I still have alot of pain in my neck and shoulders and occasional burning from the CIDP…
The pain mgmt dr is FABULOUS. He may be one of a kind but he truly and deeply cares about me and all of his patients. I never want to lose him.
It might be worth it to look for one…they can get your pain controlled with whatever kind of med you need…but you’ll need to find the right one.
Best wishes Ty…and welcome.
AnonymousOctober 1, 2009 at 10:03 pm
Hi Stacey: Thanks for sharing your story. It is not easy to discuss such things, but it is good to hear how you dealt with meds. My physiatrist is like yours-he is the only doctor who took an hour to listen to me and my story, my needs, the kind of pain I had etc. And together in just a few visits we transformed my life and the way I dealt with pain. I have heard similiar things about other physiatrists; maybe it is their training and something about them that makes them go into rehabilitation medicine which is their specialty. In any case I certainly think people with chronic pain need specialists in pain control. Jeff
AnonymousOctober 2, 2009 at 12:29 am
Right now I’m trying to hang on to my family.
So since I posted it has been an amazing relief for me to feel normal… I went for too long feeling so lonely and desparate. I have found the strength inside to actually stop taking a lot of my meds and am trying to keep things as good as they can be…thanks to all of you that have commented to me or shared with me. I feel different knowing you’re here.
AnonymousOctober 2, 2009 at 11:26 pm
I was just thinking about this the other day.
In June of 2005, I had just gotten out of school for the summer. I’m a teacher. I was telling my wife that I thought my new summer wear sandals were too tight, because my toes were numb. She told me that as soon as I took off the “tight” sandals, that my feet should regain their feeling. I, of course, being a strong headed male thought she was wrong. One would think I would listen to my wife, an RN.
I decided to ignore symptoms for a couple weeks. Did I mention I was stubborn?? When I fell trying to touch an 8 foot basketball rim, I knew something was wrong. That is a about a 5 inch jump for me! That’s when I finally admitted that something was really wrong! I’m sure my nerves to my brain were effected!
So, I guess I am into my 4th year. Hard to believe! I got diagnosed with GBS on about July 6 and then CIDP in June of 2006.
AnonymousOctober 7, 2009 at 2:51 am
I have jumped on your suggestions and as I write you, I wouldn’t know I was ill. Of course that can change at any moment!
But, you have all rallied behind me and been a fantastic support to me. If I could thank you each face to face I would…but please know that this forum has revitalized my hope, helped me thru a bad spot and put me on a better plan for my life.
There is not enough gratitude I can express to you all.
You have been the support I needed when I needed it with the perfect words of encouragement and understanding.
Thank you seems like it could never be enough, but for now…it is simple gratitude I have for each of you.
God bless you.
AnonymousOctober 8, 2009 at 4:13 pm
I like this thread because it gives me a chance to learn about others’ experiences. My helliversary happened October 4, 2007. Fortunately, I had just traveled back from a small town in Kenya to Nairobi, the capital, where there are decent hospitals, and as it turns out a very informed neurologist. My onset was rapid and very severe, starting from poor swallowing, then weakness in the head, neck and shoulders. In less than 24 hours I became almost completely paralyzed and was on a respirator. Like many others I have heard about on this forum, I spent many weeks in ICU (3 in Kenya, 4 in South Africa) and then many months in an inpatient rehabilitation facility (in South Africa).
After a rather dangerous and life threatening period at the beginning, I count myself as one of the truly lucky ones. I say that because although I am not fully recovered (mainly the leg muscles), I have made continuous progress. Many of the people who write on the forum have had many more lingering problems than me and though I wish I could help, I can’t pretend that I have had the same difficulties. It was also very illuminating in the rehabilitation facility because although I was definitely the weakest person there at the time, I was improving while most of the others were learning how to deal with permanent disabilities (many were paraplegics).
Coincidentally, my helliversary falls about the exact time as an annual “Wheel Walk” that is held in Nairobi by the Kenya Paraplegic Organization to raise funds for a new Spinal Injury Hospital. So long as I am still living here, there is no better way to mark my helliversary than to participate in that walk!
AnonymousOctober 12, 2009 at 10:24 pm
August 29,2007…..everywhere I walked or sat was a minor earthquake. My house, my chairs and my bed vibrated constantly. I couldn’t understand why no one else in my family felt it. Three days later I knew the reason, it was my GBS attack day. A few weeks of stumbling and fixed pupils; a few months of lead heavy legs and crawling up the stairs…feeling pretty good that I avoided a major crash…and then the pain started and it has never stopped. Inside any month, I struggle. But if I keep my eye on the years or half years, I can actually notice improvement. Last month was creepy…I think I had the flu or a virus. Over two nights the slightest vibrations came back, in the exact same order as my original GBS…feet, legs, trunk, shoulder, face. I was almost afraid to get out of bed in the morning. But, I could walk…no weakness, stumbling…everything A OK! Hooray! I had a plan to jog on my 2nd helliversary. Didn’t happen ’cause I had increased my walk from half mile to three quarters, and the stiffness and aches were too much. Bad left leg, mostly, and rotten feet. Yesterday I drove for 8 hours, another milestone. Once I got out of the car, the pain and vibrations started with a vengeance. Discouraged, I climbed into bed early and just quit my day. This morning I woke up with a silent body…true bliss and only the third time in two years. It was so heavenly I lay there for 20 minutes not moving a muscle, knowing that as soon as I did, some weird residual would kick up. So I enjoyed my fantasy “normal” for as long as I could, and I loved every minute of it! The first time it happened, I cried because I was so mourning the loss of my pre-damaged body. I guess I’ve lowered my expectations somewhat since then. I ran into an acquaintance, who gushed at how great I looked and how worried she had been the last time she saw me. Actually, I had thought I was doing great that last time! Getting better slowly….I guess I am. Love that this forum is here. Folks who truly understand this altered reality. On to year 3!:rolleyes:
AnonymousNovember 12, 2009 at 7:10 pm
Just found this. I’ve been checking in but not near enough. Love the “Hellaversary” title. Mine was 5 years ago. How can we ever forget?!
I was getting ready for another day teaching Phys. Edu. and felt like I’d downed a bottle of wine. Drove myself 20 minutes to school (dumb idea) and by noon I was leaning up against the wall in the gym officiating a volley ball game and hoping the jr. high students didn’t notice how much I needed that wall. I made it to the lunch hour and called my principal on my cell to come to the gym.
Drove myself another 20 minutes (yet another dumb idea) to a Dr. I knew who had told me to get right over after I described what was going on.
Two days later I was in a hospital an hour away in the emergency room since it was the only way they’d admit me. Spinal tap, no reflexes all the good stuff that put us on our back and had a diagnosis 24 hours later.
It’s all still so vivid. Just got a chill up my spine.
Hope you are all doing as well as you can.
AnonymousNovember 14, 2009 at 2:12 pm
Hellaversary, eh? 😉
My 18th “hellaversary” was September 12, 2009. I can vividly recall the downward spiral of GBS. I was under a great deal of stress; my father had passed away almost one month to the day my first symptoms occurred. I was very close to him as he raised me and my siblings (my mother passed away shortly before my 2nd birthday). So, it was like losing both parents at once. Additionally, two of my cousins were killed in an accident on the way to my dad’s funeral.
I worked in Downtown Detroit. I was very active and (somewhat) fit, and realized that I was plodding along instead of my usual fast paced walk. I also started feeling weird sensations/pain on my arms and legs. So, I went to the doctor. She stated that it was probably stress, prescribed Naproxen for the odd pain and sent me on my way. The pain can only be described by saying; my skin hurt.
Later that week, while at work, I was squatting to put files away in a file cabinet. I could hardly stand!! 🙁 I realized something was wrong but had no idea what.
I noticed what I thought was a Charlie Horse in my right calf. My friend laughed and called me old lady because I couldn’t keep up with her while walking to lunch. I shrugged it off and while attempting to eat, I had a difficult time chewing. At this point, we’re both becoming concerned.
Again, I shrugged it off. I went to my second job. :rolleyes:
At this point, I’m struggling to walk and keep my balance. Literally sliding alongside the walls. Again, my lovely co-workers laughed…not maliciously. I laughed too, though in my heart, I knew something awful was occurring.
[B][I]You know, while typing this, my palms have gotten sweaty and I’m crying. I guess it’s painful to relive this, but I’m going to continue.[/I][/B]
Anyway, by the time I left my second job, one of the co-workers I carpooled with had to help me from the car. He also had to help me up the two flights of stairs at my apartment building. I was beginning to panic. Especially when I had to fight to get the key in the door.
Still not accepting that something was wrong, I propped myself up against the wall and ironed. I had to get my clothes ready for the next day. At the same time, I was on the phone with my Godmother. My speech was becoming affected and she begged me to call off work. I promised to do so if I didn’t feel better the next morning.
The next morning arrived….and that was it. I couldn’t get out of bed. I grabbed the phone, called one of my sisters (she worked at a local hospital) and left her a message. Basically I said, I can’t stand up. I couldn’t even crawl. I hope this next part isn’t TMI, but I had to go to the bathroom. While awaiting my sister’s call, I slid to the floor and slid on my stomach to the bathroom. I was able to use the sink to pull up and sit on the toilet.
Two of my sisters arrived approx. 5-10 minutes later. The manager of the building let them in. They saw how weak I was, and begged me to let them call an ambulance. I talked them out of it.
I cannot tell you how many times all 3 of us almost fell down the stairs. They physically supported me on each side, but almost dead weight is heavy. When we arrived at the emergency room, I stood long enough to fall into a wheelchair and that was it. Done. No more walking for a while.
I stayed at that particular hospital for a week, mainly because my doctor was affiliated. She was at my bedside in tears as I’d just been in her office two days earlier. That entire week, they did absolutely nothing. I couldn’t eat as I couldn’t swallow anything. They allowed me to fall. Yep….horror story there. They ran numerous tests. Eventually, they ordered a lumbar puncture, NCV and EMG. That was the first time I heard of Guillain Barre Syndrome.
My sister had me transferred to Harper Hospital as she worked closely with one of the neurologists. He admitted me to ICU as my breathing was becoming affected. Thankfully, I didn’t require a trach. However, the paralysis was far reaching. With the exception of the left side of my face, I could move….nothing. I had six series of plasmapharesis. Not sure how much good it did as I didn’t have it until two-three weeks after my first admission to the hospital.
To make a long story short (to late, eh), I spent 2 weeks in ICU, 2 weeks on a regular floor at the hospital, 2 months at the Rehabilitation Institute of Michigan and 6 months of outpatient therapy. I still have one heck of a limp, but I’m happy to walk. I use a cane when out of doors and went back to work full time 14 months after the big bang. I have the usual residuals, but this has become my new normal. I’m grateful for every day I’m alive, especially the pain free days.
I’ll end this lengthy post with a very heartfelt, God is good!!
AnonymousDecember 1, 2009 at 4:54 pm
My anniversary is 50 years on Christmas eve. I was 5 years old in 1959. (Now 55). I was not able to walk for almost a year. I was never on a ventilator, if I had needed one, I might not be alive today.
I have fatigue (quite a lot), foot drop and increasing numbnes in my feet. My right foot has become almost totally numb in the last 2 years and I am starting to get numbness in my right hand. I have pain in my left leg.
I have done pretty well, considering there was no treatment available in 1959. I am emotionally still affected. I have anxiety and panic attacks. Sometimes I feel like a really angry 5 year old girl is in charge of my life. She’s not terriby rational either! 😡
I have always been clumsy and have very little strength in my legs.
I was very active in this forum about 8-10 years ago, and was able to reconstruct my GBS experience and figure out some things. All my old posts are gone though.
I think I had campylobactor infection from drinking raw milk. Plus a lot of stress with Mom remarried, moving far away and having a new baby brother.
It has been so very helpful to have this forum, and to read Gareth Perry’s articles on post-GBS effects, people had me believing I was just lazy because I needed to sleep so much and had no energy left after working an 8 hour day. Even at my best level of fitness I could not keep up with other people. I guess the hardest part has been feeling like such a loser most of my life. 🙁 In spite of getting a master’s degree and having a successful career.
Thanks for letting me vent. :rolleyes: Take care!
AnonymousDecember 1, 2009 at 11:34 pm
Wow…………50 !! I think that sets a new record for longest post recovery time for anyone that I have seen posting on here?? I havent been on here too long, (since 2004), but, I dont remember seeing anyone 50 yrs recovery and still talkin about it. Congratulations and thank you for posting your experience.
AnonymousDecember 6, 2009 at 4:57 pm
I’m approaching my 13th Hellaversary and found this thread very comforting. Even though a lot of us don’t check in on this site often enough, when I do you all are always there for me. I would like to think I will check in more often to help others… I hope I do.
Still dealing with my only niece who recently said “quit using GB as a crutch”. I have to fight feeling like I am totally nutso which is a life fear I have because I have a sister who is totally nutso officially.
My pain stuff seems to get only worse as the years go by and I would not mind leaving this planet sooner than later. I’ve never taken much pain meds, but just sprained my ankle bad and doc gave me lortab 7.5. It doesn’t seem to do much, but does help me sleep with the amitriptaline and xanax I take. The spraining of my ankle is one of many falls I have taken this year – mainly falling forward slamming my knees and hands into the ground. Ouch! Pratically unemployed ($8 hr/ 30 hr week) with no benefits I am praying for help with getting shoes I need.
That’s my 2-cents for the day.
AnonymousDecember 7, 2009 at 1:39 am
How are you?……well, besides hurting your ankle, that is…:(
Sorry that u have hurt your ankle. They are the hardest to heal…………..
You are very thoughtful to say that you would like to think that you could help someone when you come on here. Very nice. and I am glad that you feel this thread is comforting for you. 🙂
P.S. btw, what kind of shoes are you needing??
AnonymousDecember 8, 2009 at 10:53 am
December 28, 2005 for me is the day Dr. Groblewski recognized I had GBS and admitted me to a local hospital. It is a doctor’s appt I will not forgot. As time went on, we discovered that my attack came about from having an upper respitory infection and being treated for it along with an influenza vaccine a month later the beginning of the start of the URI. While conversing with my employer’s nurse about the medication for the URI and if I was permitted to work with it, she insisted I get a flu shot to save my co-workers and family from the flu. This resulted in my immune system fighting off multiple virsuses and at that point deciding to attack everything including my nerves. After being treated with IVIG, I started a uphill battle to get back to where I was prior to GBS. Being an active person, I went on a rehab that would make the average person’s head spin. Month 4, I was given the okay to drive again. Month 6, I was given the okay to return to work, but my employer’s doctor would not let me work while taking pain medication, so I decided to try Infrered treatment(Anodyne) and it proved to hold the pain in check for a year. After month 18, I switched to Cymbalta for pain relief, but only to lose my job. It is now year 4 and I have been given temporary jobs since month 18 to keep health insurance and for a source of income and to help 2 kids as they have just started college. I was successful in proving my case to the vaccine injury compensation fund and I was awarded funds for only pain and suffering. The rest of the lost wages, both past and future and medical coverage will come from workers comp which was finally accepted only after month 14. I decided to make the second anniversary of when I received the flu shot a day to remember and rewarded myself with something I looked forward to when I could not walk, let alone drive- to a nice new shiny automobile. I purchased a 2008 Chevy Corvette and decided to purchase a noveltary plate “FLUSHOT”. Worker’s Comp has been fighting me every step of the way and will not accept all the problems that has reared its ugly head since I developed GBS.
So now it is early Dec. 2009 and I have celebrated the Date of Injury, but the 4th Hellavesary is just around the corner for me.
December 8, 2009 at 3:14 pm
Great idea for a thread Perry. Great name too. I’m approaching 17 months. My story is under the CIDP Discussion B-12 Difficiency. (That’s was my initial misdiagnosis). Summary: CIDP sux; God is getting me through this too. 😉
I too got a lot out of reading the posts on this thread (not many understand what we go through). I consider y’all my cyber family and need to say it again that you all are very special people. A true God send.
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